Sick children wait for medical marijuana as nurseries fight over who gets to grow it

Amy Guenst comforts her son, Luke, 4, during an exam at All Children's Hospital Johns Hopkins Medicine in St. Petersburg﻿. Guenst hopes Luke will be able to one day use medical marijuana to ease the pain of chemotherapy. EVE EDELHEIT | Times

Efforts to get medical marijuana to critically ill Floridians are once again stalled, this time because of legal wrangling that could take months to resolve.

A dozen nurseries are challenging the way Florida awarded licenses to grow and dispense the drug — and asking an administrative law judge to take a second look at the applications that were passed over.

The nurseries contend the Florida Department of Health flubbed the selection process and say the challenges are necessary to ensure only the best operations get the licenses. But some parents say they have already waited long enough to get the drug to their sick children.

They are quick to note almost 20 months have passed since Gov. Rick Scott signed the law that legalized noneuphoric marijuana for people who have cancer and rare forms of epilepsy, and the medicine still isn't available.

"There aren't even seeds in the ground," said Amy Guenst, a Valrico mom whose 4-year-old son Luke is being treated for leukemia. "It's really sad."

For Guenst, the back-and-forth has meant a longer wait while her son continues to suffer. She said cannabis is the best option to alleviate his pain after chemotherapy treatments. Sometimes, his legs ache too much to walk.

"It burns his nerve endings," she said. "It is pain that nothing can help."

This isn't the first time the process has been delayed. The licenses were originally going to be distributed through a lottery, but in late 2014, an administrative law judge ordered the Health Department to come up with a new system. State health officials later convened a "negotiated rulemaking committee" that included representatives from several nurseries to devise a competitive process.

The following summer, a total of 24 nurseries applied for state-issued licenses to grow and dispense low-THC marijuana. The state named one winner in each of five geographic regions — northwest, northeast, central, southwest and southeast — in late November.

In selecting the winning nurseries, a panel of three "graders" reviewed more than 30,000 pages of material, said Christian Bax, who oversees the Health Department's Office of Compassionate Use.

"The paper alone weighed over 300 pounds," Bax told the Senate Regulated Industries Committee on Jan. 13. "The cumulative workload for each of the three graders was the equivalent of reading War and Peace 21 times."

A review of the nurseries' petitions shows a wide range of concerns with the selections. The challenge filed by Sarasota's Tropiflora, for example, noted that four of the licenses went to nurseries that helped shape the selection process — and said the Health Department may have broken the law by choosing them.

In a separate challenge, Ruskin's 3 Boys Farm raised doubts about whether the winning nursery in the southwest region (Alpha Foliage) had been in operation for 30 continuous years, a requirement for all potential growers under Florida law. 3 Boys also questioned "unexplained instances of changed scores" on its score card, as well as the score card for Alpha Foliage.

San Felasco Nurseries in Gainesville, meanwhile, argued it had been "erroneously disqualified" from the northeast region because the state mistakenly determined a member of its team had failed a background check.

"The office's decision to disqualify San Felasco must be reversed, and as the highest-scored qualified applicant, San Felasco must be awarded the northeast region dispensing organization license," attorneys for the nursery wrote.

Observers weren't surprised by the flurry of petitions. Jay Wolfson, a health law professor at the University of South Florida, said the nurseries have a right to challenge the state's selections. But Wolfson also said the Health Department was ill-equipped to create a new industry in Florida.

"The Legislature is basically dumping this huge burden on an agency which already has at least one hand tied behind its back and is in the process of implementing a mandatory substantial reduction in force," he said, adding that state health officials also faced "political pressure to be as restrictive and limited as possible."

What's more, Wolfson said, state lawmakers failed to address problems with the law during the 2015 legislative session because of gridlock between the House and Senate over Medicaid expansion.

Meanwhile, Amy Guenst says doctors are addressing her son's neuropathy pain with prescribed narcotics. But she isn't keen on pumping more heavy-duty drugs into his system.

"People die from narcotics," she said. "Why should I not be allowed to give him something nature gave to us?"

If she had her druthers, her son would be able to use the whole marijuana plant as part of his treatment — a step beyond what is allowed by the 2014 law.

Since the petitions were filed in December, the lone challenge to the selection of Costa Nursery Farms in Miami has been resolved, Division of Administrative Hearing records show. The remaining challenges have been consolidated by region.

In each of the four cases, an administrative law judge can hit the reset button and determine which of the applicants should be that region's dispensing organization. But the process could take months. The hearing for the northeast region isn't scheduled until July. The nurseries in the northwest region will make their cases in April.

In the meantime, there are questions over whether the chosen nurseries can proceed.

Bax told the Senate panel his office would soon begin giving them the green light to cultivate medical marijuana. "Our priority is, was and will remain to ensure all of this is carried out quickly and as safely as possible for Florida's patients," he said during the hearing in Tallahassee.

But on Tuesday, San Felasco, 3 Boys Farm and McCrory's Sunny Hill Nursery filed a complaint asking a circuit judge to prevent the "prospective awardees" from moving forward until the challenges have been resolved.

"We want our day in court," attorney Jim McKee said.

McKee said the lawsuit won't completely stop the process because Costa Nursery Farms no longer faces any challenges and can distribute its product across the state. Costa's vice president Pedro Freyre has said his operation plans to begin cultivation next month in hopes of processing and dispensing the drug by September.

Parents, however, remain frustrated.

Moriah Barnhart, co-founder of the Florida-based advocacy group CannaMoms, blames the lawmakers who crafted and passed the legislation.

"It's not the fault of the (Health Department) that couldn't implement it properly," Barnhart said. "It's not the fault of the (nurseries) filing the challenges. This was, from Day 1, a nonimplementable, discriminatory bill. Period."

The ensuing "mess," she added, is proof Florida needs a more wide-ranging medical-marijuana measure, akin to the constitutional amendment that will appear on the November ballot. The proposal would make medical marijuana available to people with "debilitating medical conditions" — and task the state Health Department with registering and regulating marijuana production and distribution centers.

Barnhart said neither the law nor the constitutional amendment would "bring cannabis to the state of Florida."

"It is already here," she said. "What we, the parents, are asking for is reassurance that while we are up all night watching our children breathe, making sure they are okay, a SWAT team isn't coming into our home."

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